Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"

Wednesday, May 24, 2017

Bleeding Heart ______, or I Hate Change, Part 10

I will give you a new heart and put a new spirit in you;

I will remove from you your heart of stone and give you a heart of flesh.

Ezekiel 36:26 (NIV)

[Sidebar: No, you haven't missed anything. I haven't updated this blog since Saturday night. Read a few books. Caught up on Twitter. Watched a bunch of Honest Trailers (see YouTube.) But the drive was gone. I was waiting for something to come to me, but I had nothing. Well, not exactly. I had the title and the verse for this post, but I didn't want to write it. I figured that if I waited long enough, something else would come to me. Nope. Nada. So, after 4 days of lollygagging, here is my attempt.]

We often use the term "bleeding heart ______" in a derogatory fashion. Bleeding heart liberal. Bleeding heart activist. Idiotic bleeding heart. It signifies someone, of any political persuasion, who expresses excessive emotion towards the plight of someone else. But in my first post last Monday, I described my condition as someone whose heart was still wounded, still actively bleeding from the life changing event that was Alex's diagnosis of ASD. But what does that mean?

Medically speaking, when your heart is bleeding, you find some heart surgeons and they stitch your heart right back up again. It may not work as well as before and your recovery time is probably lengthy, but it is often survivable. But we use the word "heart" to describe both the organ in our body responsible for pumping blood but also, metaphysically, as the seat of our emotions. And just as our physical heart may be wounded and require healing, so can our emotional heart.

I think what happened in 2006 was that I didn't have the time or energy to seek healing for my broken heart. We had to get Alex through the doctor appointments and behavioral evaluations and then Early Intervention and then preschool, all the while, Miranda had to finish growing inside of me. If I didn't have the energy to pray, I certainly didn't have the energy to heal.

The problem was, when we survived 2006 (we had buttons made and everything, "I Survived 2006"), 2007 wasn't that much easier, so the bandage that I'd wrapped around my emotional heart to stop the bleeding got thicker and thicker and, as time continued to pass, turned into a hard crust. I was under the delusion that if my heart was "hard" enough, it would protect me from future damage. It should have been easier when, in the spring of 2008, Miranda was also diagnosed with ASD. But it was still devastating. Familiar, but just as painful.

The new reality did nothing to change my behavior. I threw myself, once again, into Early Intervention, working with new therapists but the same case manager. And even though Miranda's speech started improving at a rapid rate, her behaviors got worse. I don't have a lot of good memories of the year she was 2. What I do remember is wrapping her in her blankets while she screamed and thrashed, and sitting with my legs over her to keep her from hurting either of us. It seemed to last for hours, but was rarely longer than 30 minutes. She would wear herself out and recover and then I would go get a handful of York Peppermint Patties, and, as my friend Robin says, "eat" my feelings. You would not be surprised that she was eventually diagnosed with ODD as well, but not until first or second grade.

[Sidebar: Both of my children have the diagnoses of ASD, AD/HD, and ODD. It is not unusual to find these syndromes as a part of a package deal; it's called comorbidity. But it is helpful medically to separate them out because treatment options are different for each diagnosis, and the school district treats them separately when allocating resources in your IEP. Also, the severity can fluctuate. Alex's AD/HD often gets in his way of being able to participate in therapy for his ASD. Miranda's ODD can block her classroom participation completely; she just gets stuck and often cannot reset without a change of scene. When your doctors and teachers know all of this, it really helps them to help you move forward.]

So, here I am, with a heart hardened by years worth of bandages. I had intended those bandages to protect my heart until it could heal on its own (didn't happen; not impossible, but didn't happen) or to prevent further damage (which also didn't happen). In the end, what I ended up was a heart hard enough to prevent healing but soft enough to keep bleeding. Lose-lose.

As I was writing this, I was reminded of a passage in Hebrews:

So, as the Holy Spirit says:

"Today, if you hear his voice,

do not harden your hearts

as you did in the rebellion,

during the time of testing in the wilderness,

where your ancestors tested and tried me,

though for forty years they saw what I did.

That is why I was angry with that generation;

I said, 'Their hearts are always going astray,

and they have not known my ways.'

So I declared on oath in my anger,

'They shall never enter rest.'"

See to it, brothers and sisters, that none of you has a sinful, unbelieving heart that turns away

from the living God. But encourage one another daily, as long as it is called "Today," so that none

of you may be hardened by sin's deceitfulness. We have come to share in Christ, if indeed we

hold our original conviction firmly to the very end. As has just been said:

"Today, if you hear his voice,

do not harden your hearts

as you did in the rebellion." Hebrews 3: 7-15 (NIV)

Pretty hard stuff. Pretty serious words. A hardened heart not only damages you, it separates you from Christ and thus leads you into sin, and from there, it damages the community around you. It starts as a quick fix and then becomes a habit which leads to separation from God. This is a problem because only God can heal a damaged heart.

Go back to the top and read the verse from Ezekiel again; a new heart and a new spirit go together. When the Holy Spirit is within me, my heart is renewed, old wounds are healed, and I live in hope again.

So, in the end, my goal in writing these blog posts is "bleeding heart healed." Lord, may it be so.

No comments:

About Me

I grew up in the Central Valley in California, left it behind forever to attend Seattle Pacific University in Washington, and then followed my husband to the Philadelphia suburbs in southern New Jersey in 1998. I have two children, Alex who is 15, and Miranda, who is 12. Email me at sarah at webwrench dot com.